ME/CFS
Moderate → no benefit
ME/CFS with POTS and PEM, bedbound for a day after travel, now no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I am on few anti-psychotics and anti-depressants for my MDD due to CFS, dysautonomia
In context ↗ - At worst: Moderate
Taking shower is a challenge and have to take rest for sometime after taking shower.
In context ↗ - Now: No benefit
Things are falling apart...Don't know how to recover.
In context ↗
Read from 18 of their posts and comments; links to the 15 this page draws on
Summary
Rain 88104 has CFS with dysautonomia and POTS, PEM that leaves them bedbound for a day after travel, cognitive decline, pain, IBS-C and an altered sleep cycle; flu-like symptoms worsened after COVID. Mast cell stabilisers, antibiotics and L-arginine gave little benefit; modafinil improved focus but not physical energy; SSRIs/antidepressants didn't help fatigue or pain; antipsychotics caused weight gain; they were on oral ketamine. Methylphenidate caused panic and suicidal thoughts. By 2026 they had gained weight, become diabetic and had severe depression during PEM.
Ask Miruvor AI
What they tried
Also tried
anti-depressants (paroxetine, SSRIs)· HelpedAcceptance and Commitment therapy· Helpedpacing with heart-rate (BPM) monitoring· HelpedModafinil· HelpedTramadol· HelpedIF (intermittent fasting)· No changemast cell stabilizers· No changeantibiotics· No changegargling with salt water· No changesupplements, vitamin tablets, injections· No changeL Arginine supplements· No changeanti-anxiety medication· No changemethylphenidate / stimulants· Worseanti-psychotics· Not saidLow-FODMAP diet· Not said2 minutes of body-weight strength exercise· Not saidsedatives· Not saidshots for trigger point pain in back and shoulder· Not saidoral ketamine· Not said
Their words about each treatment
- anti-psychotics · Not said
I have gained several pounds after starting anti-psychotics
In context ↗ - anti-depressants (paroxetine, SSRIs) · Helped
there are few SSRIs i'm on for POTS but only few of those help so have to stick to it
In context ↗ - IF (intermittent fasting) · No change
I tried IF with no help
In context ↗ - Low-FODMAP diet · Not said
I also have IBS-C so currently on Low- FODMAP diet
In context ↗ - Acceptance and Commitment therapy · Helped
Acceptance and Commitment therapy helped to focus my energy on pacing with emphasis on BPM
In context ↗ - pacing with heart-rate (BPM) monitoring · Helped
If my BPM goes beyond 90, I feel lot of discomfort and so I need to monitor BPM and exert
In context ↗ - 2 minutes of body-weight strength exercise · Not said
I try only 2 mins of strength using body weight in a gentle way
In context ↗ - mast cell stabilizers · No change
Tried mast cell stabilizers, antibiotics, gargling with salt water but nothing helps
In context ↗ - supplements, vitamin tablets, injections · No change
I have tried many supplements, vitamin tablets, injections but none seems to be working
In context ↗ - L Arginine supplements · No change
I have tried L Arginine supplements with no major improvement in mental and physical energy
In context ↗ - Modafinil · Helped
With Modafinil, my focus, concentration, has improved but there is no improvement in physical energy or fatigue
In context ↗ - anti-anxiety medication · No change
But antidepressants, anti-anxiety never made difference in fatigue and pain
In context ↗ - sedatives · Not said
I believe I'm sensitive to sedatives but despite adjusting the dose I feel drowsy next day
In context ↗ - methylphenidate / stimulants · Worse
I was put on methylphenidate but it led to super anxiety, panicky and suicidal thoughts so had to be stopped
In context ↗ - Tramadol · Helped
Can't sit for long without Tramadol
In context ↗ - shots for trigger point pain in back and shoulder · Not said
Have taken several shots for trigger point pain in back and shoulder
In context ↗ - oral ketamine · Not said
I'm on Psychiatric medicines and oral ketamine too for neuropathic pain and depression
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | Onset of CFS with dysautonomia, date not givenI am on few anti-psychotics and anti-depressants for my MDD due to CFS, dysautonomia.In context ↗ | Not stated |
| 2022-06-12 | flu-like throat, ear and eye symptoms worsened after COVIDIt has worsened since I had COVID (post recovery).In context ↗ | Moderate |
| 2023-12-14 | bedbound for a day after travel, showering needs rest, can't sit long without TramadolAfter traveling, I have to be bed bound next day and home bound for few days to get back to my baseline usual energy levels.In context ↗ | Moderate |
| 2024-08-30 | cognitive issues gradually worseningMy cognitive issues have been gradually worsening.In context ↗ | Moderate |
| 2026-01-19 | severe depression during PEM, weight gain and diabetesI have put on a lot of weight and am now diabetic.In context ↗ | Moderate |
Adverse events
- Antipsychotics (unspecified)“I have gained several pounds after starting anti-psychotics.” In context ↗ Side effects
- Benzodiazepines (unspecified)“I believe I'm sensitive to sedatives but despite adjusting the dose I feel drowsy next day.” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“I was put on methylphenidate but it led to super anxiety, panicky and suicidal thoughts so had to be stopped.” In context ↗ Suicidal thoughts or attempt
- Paroxetine (Paxil)“Because of meds and exercise intolerance I have put on a lot leading to prediabetes. ... I have put on a lot of weight and am now diabetic.” Side effects
- Antipsychotics (unspecified), Paroxetine (Paxil)“Anticholinergics may be adding to cognitive issues but they don't seem to be main cause of cognitive dysfunction.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
After traveling, I have to be bed bound next day and home bound for few days to get back to my baseline usual energy levels.
In context ↗ - Brain fog
My cognitive issues have been gradually worsening.
In context ↗ - POTS & dysautonomia
there are few SSRIs i'm on for POTS
In context ↗ - Sleep problems
I wake up frequently at night and crave for sweets/food.
In context ↗ - Pain & fibromyalgia
Pain on constantly using any body part, like typing leads to pain in arms
In context ↗ - Gut problems
I also have IBS-C so currently on Low- FODMAP diet.
In context ↗ - Anxiety & low mood
I was getting suicidal thoughts so was put on SSRIs and anti-psychotics.
In context ↗ - Neuropathy & tingling
I have burning in arms and legs.
In context ↗ - Flu-like symptoms
I have recurring sore/scratchy throat with itching in ears, watery eyes and severe muscle aches and debilitating fatigue.
In context ↗ - Heart symptoms & palpitations
If my BPM goes beyond 90, I feel lot of discomfort
In context ↗